Tobramycin for Inhalation

K

KrazyKat

New member
Hi everybody

My doc is on leave having her first baby at present and I've decided that as i'm starting to get a little chesty and have only come off IV's 5 weeks ago, i want to start a daily inhalation of Tobramycin.
We don't have TOBI over here but i understand from my nephew that it is possible to simply inhale the IV form of this instead, although it is not very pleasant.

I have plenty of vials of Tobramycin left over from a few IV treatments ago as I no longer IV it, instead I do Ceftazadime and Meropenem.

I know that it is my pseudos not my cepacia that gives me the most grief (I didn't even culture cepacia the last time I was sick and this is the sickest i've ever felt, so obviously it's the pseudos kicking my butt) and i know my pseudos are sensitive still to most/all antibiotics and definitely to tobramycin.

What i need to know is a) how do I mix the tobramycin for inhalation? b) do i need to use a separate nebuliser to the one I use for pulmozyme and c) how gross is it and what should I look out for in the way of bad side effects?

Any advise welcome here as I'm keen to get started and hopefully avoid another round of IV's.
 
K

KrazyKat

New member
Hi everybody

My doc is on leave having her first baby at present and I've decided that as i'm starting to get a little chesty and have only come off IV's 5 weeks ago, i want to start a daily inhalation of Tobramycin.
We don't have TOBI over here but i understand from my nephew that it is possible to simply inhale the IV form of this instead, although it is not very pleasant.

I have plenty of vials of Tobramycin left over from a few IV treatments ago as I no longer IV it, instead I do Ceftazadime and Meropenem.

I know that it is my pseudos not my cepacia that gives me the most grief (I didn't even culture cepacia the last time I was sick and this is the sickest i've ever felt, so obviously it's the pseudos kicking my butt) and i know my pseudos are sensitive still to most/all antibiotics and definitely to tobramycin.

What i need to know is a) how do I mix the tobramycin for inhalation? b) do i need to use a separate nebuliser to the one I use for pulmozyme and c) how gross is it and what should I look out for in the way of bad side effects?

Any advise welcome here as I'm keen to get started and hopefully avoid another round of IV's.
 
K

KrazyKat

New member
Hi everybody

My doc is on leave having her first baby at present and I've decided that as i'm starting to get a little chesty and have only come off IV's 5 weeks ago, i want to start a daily inhalation of Tobramycin.
We don't have TOBI over here but i understand from my nephew that it is possible to simply inhale the IV form of this instead, although it is not very pleasant.

I have plenty of vials of Tobramycin left over from a few IV treatments ago as I no longer IV it, instead I do Ceftazadime and Meropenem.

I know that it is my pseudos not my cepacia that gives me the most grief (I didn't even culture cepacia the last time I was sick and this is the sickest i've ever felt, so obviously it's the pseudos kicking my butt) and i know my pseudos are sensitive still to most/all antibiotics and definitely to tobramycin.

What i need to know is a) how do I mix the tobramycin for inhalation? b) do i need to use a separate nebuliser to the one I use for pulmozyme and c) how gross is it and what should I look out for in the way of bad side effects?

Any advise welcome here as I'm keen to get started and hopefully avoid another round of IV's.
 
N

NoExcuses

New member
1. Your IV Tobra has preservatives in it. That's not good for your lungs otherwise we in the US wouldn't have a use for TOBI..... this is why TOBI exists....

2. If you still decide to neb the Tobra despite it not being good for your lungs, yes use a seperate neb than pulmozyme

3. Side effects can be tinitis
 
N

NoExcuses

New member
1. Your IV Tobra has preservatives in it. That's not good for your lungs otherwise we in the US wouldn't have a use for TOBI..... this is why TOBI exists....

2. If you still decide to neb the Tobra despite it not being good for your lungs, yes use a seperate neb than pulmozyme

3. Side effects can be tinitis
 
N

NoExcuses

New member
1. Your IV Tobra has preservatives in it. That's not good for your lungs otherwise we in the US wouldn't have a use for TOBI..... this is why TOBI exists....

2. If you still decide to neb the Tobra despite it not being good for your lungs, yes use a seperate neb than pulmozyme

3. Side effects can be tinitis
 
L

lightNlife

New member
Only your doctor can decide which antibiotics will benefit you at which times. It is very risky to attempt to modify an IV dose to be an inhaled medication. Chances are the Tobra you have has already expired. Whenever a medication is discontinued, you should immediately dispose of any unused portion of them so as to prevent future problems.

I'm nearly 100% certain that your doctor has made arrangements to have someone cover her patients' needs while she is on leave. Do what you can to get a doctor's input on your situation before trying anything on your own. When it comes to the high potency meds we take, it's best not to screw around with them on our own.

You may want to ask the on-call doctor (who's pinch-hitting for your regular doc) to start you on a course of Azithromycin.

Just a reminder for all of us--be safe and trust your doctors to make the right call on which meds you need. I know a lot of us know our bodies very well and are almost always correct when it comes to self-diagnosing, but it's not worth the risk to self-medicate in lieu of visiting a doctor. I lost a dear friend quite suddenly a few years ago when she self-treated what she thought was simply a UTI. It turned out to me much more serious than that; the course of treatment she did for a UTI only made things worse and she had to be hospitalized. She was gone within 2 days.
 
L

lightNlife

New member
Only your doctor can decide which antibiotics will benefit you at which times. It is very risky to attempt to modify an IV dose to be an inhaled medication. Chances are the Tobra you have has already expired. Whenever a medication is discontinued, you should immediately dispose of any unused portion of them so as to prevent future problems.

I'm nearly 100% certain that your doctor has made arrangements to have someone cover her patients' needs while she is on leave. Do what you can to get a doctor's input on your situation before trying anything on your own. When it comes to the high potency meds we take, it's best not to screw around with them on our own.

You may want to ask the on-call doctor (who's pinch-hitting for your regular doc) to start you on a course of Azithromycin.

Just a reminder for all of us--be safe and trust your doctors to make the right call on which meds you need. I know a lot of us know our bodies very well and are almost always correct when it comes to self-diagnosing, but it's not worth the risk to self-medicate in lieu of visiting a doctor. I lost a dear friend quite suddenly a few years ago when she self-treated what she thought was simply a UTI. It turned out to me much more serious than that; the course of treatment she did for a UTI only made things worse and she had to be hospitalized. She was gone within 2 days.
 
L

lightNlife

New member
Only your doctor can decide which antibiotics will benefit you at which times. It is very risky to attempt to modify an IV dose to be an inhaled medication. Chances are the Tobra you have has already expired. Whenever a medication is discontinued, you should immediately dispose of any unused portion of them so as to prevent future problems.

I'm nearly 100% certain that your doctor has made arrangements to have someone cover her patients' needs while she is on leave. Do what you can to get a doctor's input on your situation before trying anything on your own. When it comes to the high potency meds we take, it's best not to screw around with them on our own.

You may want to ask the on-call doctor (who's pinch-hitting for your regular doc) to start you on a course of Azithromycin.

Just a reminder for all of us--be safe and trust your doctors to make the right call on which meds you need. I know a lot of us know our bodies very well and are almost always correct when it comes to self-diagnosing, but it's not worth the risk to self-medicate in lieu of visiting a doctor. I lost a dear friend quite suddenly a few years ago when she self-treated what she thought was simply a UTI. It turned out to me much more serious than that; the course of treatment she did for a UTI only made things worse and she had to be hospitalized. She was gone within 2 days.
 
K

KrazyKat

New member
yeah you are both right...i'm playing with fire and i know it. My doc is being replaced by the doc who preceeded her.....he has already cancelled an entire months worth of CF patient appointments and has zero intereste in CF, plus he is a nightmare to get hold of anyway.
We can't get Azithromycin over here, otherwise I would be on it!!! I'll see how i get on over the next few days i may go to my GP for a round of oral AB's instead.
 
K

KrazyKat

New member
yeah you are both right...i'm playing with fire and i know it. My doc is being replaced by the doc who preceeded her.....he has already cancelled an entire months worth of CF patient appointments and has zero intereste in CF, plus he is a nightmare to get hold of anyway.
We can't get Azithromycin over here, otherwise I would be on it!!! I'll see how i get on over the next few days i may go to my GP for a round of oral AB's instead.
 
K

KrazyKat

New member
yeah you are both right...i'm playing with fire and i know it. My doc is being replaced by the doc who preceeded her.....he has already cancelled an entire months worth of CF patient appointments and has zero intereste in CF, plus he is a nightmare to get hold of anyway.
We can't get Azithromycin over here, otherwise I would be on it!!! I'll see how i get on over the next few days i may go to my GP for a round of oral AB's instead.
 
E

Ender

New member
I am on inhaled tobra...160 mg twice a day. It has made a huge difference. TOBi was formulated so that you could inhale a higher dose, but before that came along, I think most people were on tobra. It's also a lot cheaper (300 as apposed to 3000 dollars a month)

A funny note on people saying it has preservatives. You know what my box of tobra says? Preservative free...

Oh and if you do decide to do it, mix it with a bit of albuterol to open your lungs a bit...it helps for sure....

Oh and one more thing. If you have the same vials as i have, they are 40mg/ml, but the vials are 2 ml...giving you 80 mg of tobramycin. You could start off with 1 vial (80 mg) twice a day with .5ml of albuterol to see if you can tolerate it. After a day or two, and no issues, go with 2 vials twice a day, with 1ml of albuterol. This pretty much eliminates bronchospasms.

You'll notice a huge difference...

Kiel
 
E

Ender

New member
I am on inhaled tobra...160 mg twice a day. It has made a huge difference. TOBi was formulated so that you could inhale a higher dose, but before that came along, I think most people were on tobra. It's also a lot cheaper (300 as apposed to 3000 dollars a month)

A funny note on people saying it has preservatives. You know what my box of tobra says? Preservative free...

Oh and if you do decide to do it, mix it with a bit of albuterol to open your lungs a bit...it helps for sure....

Oh and one more thing. If you have the same vials as i have, they are 40mg/ml, but the vials are 2 ml...giving you 80 mg of tobramycin. You could start off with 1 vial (80 mg) twice a day with .5ml of albuterol to see if you can tolerate it. After a day or two, and no issues, go with 2 vials twice a day, with 1ml of albuterol. This pretty much eliminates bronchospasms.

You'll notice a huge difference...

Kiel
 
E

Ender

New member
I am on inhaled tobra...160 mg twice a day. It has made a huge difference. TOBi was formulated so that you could inhale a higher dose, but before that came along, I think most people were on tobra. It's also a lot cheaper (300 as apposed to 3000 dollars a month)

A funny note on people saying it has preservatives. You know what my box of tobra says? Preservative free...

Oh and if you do decide to do it, mix it with a bit of albuterol to open your lungs a bit...it helps for sure....

Oh and one more thing. If you have the same vials as i have, they are 40mg/ml, but the vials are 2 ml...giving you 80 mg of tobramycin. You could start off with 1 vial (80 mg) twice a day with .5ml of albuterol to see if you can tolerate it. After a day or two, and no issues, go with 2 vials twice a day, with 1ml of albuterol. This pretty much eliminates bronchospasms.

You'll notice a huge difference...

Kiel
 
N

NoExcuses

New member
Kiel, you are on the injectable Tobra probably that is preservative free as you say.

The IV form always has preservatives.

She was specifically stating that she was going to use her IV left-overs
 
N

NoExcuses

New member
Kiel, you are on the injectable Tobra probably that is preservative free as you say.

The IV form always has preservatives.

She was specifically stating that she was going to use her IV left-overs
 
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